Patient Stories

All Articles in the Category ‘Patient Stories’

A New Approach to Caring for Kids with Tuberous Sclerosis Complex

Luke Avansino, now 8, was diagnosed with tuberous sclerosis complex, a rare genetic disorder, as an infant.

Eight years ago, Dr. Jeff Avansino, a surgeon at Seattle Children’s, and his wife, Dr. Amy Criniti, welcomed their third child – a boy named Luke.

For the first few months of Luke’s life, he developed as expected. At about 6 months old, he started having spells of irritability. Avansino and Criniti, both physicians, thought it was likely due to a virus. But Luke’s spells continued.

“My wife has good intuition and knew something was wrong,” Avansino said. “She started looking into his symptoms and thought he might be having infantile spasms, or seizures.”

They took Luke in for tests and Criniti was right – Luke was having seizures. Doctors also found light colored patches on his skin. Further testing confirmed that Luke has a rare genetic disorder called tuberous sclerosis complex (TSC). Read full post »

Asher Pens a Letter of Gratitude to the Doctor Who Cared for Him and His Dad

Asher was born with Robin sequence, which causes a smaller lower jaw and the tongue to be placed further back than normal. These features tend to block the baby’s airway.

The same day Kirstin and Chris King found out they were having a baby boy, they also received some unexpected news.

“We weren’t anticipating anything out of the usual,” said Kirstin. “But the look on the doctor’s face told us something was wrong.”

The ultrasound images revealed their son’s jaw was visibly stunted, which left the family with more questions than answers.

“I remember going home and thinking, ‘What just happened?’” said Kirstin.

Kirstin described the experience as a whirlwind. Read full post »

Top Seattle Children’s Blogs of 2017

As the countdown to 2018 begins, we can’t help but look back on all of the amazing stories from Seattle Children’s that inspired readers in 2017. With over 100 stories of hope, care and cures posted on our blog this year, here are the top seven most-read posts of 2017.

1. Novel Diet Therapy Helps Children With Crohn’s Disease and Ulcerative Colitis Reach Remission

Adelynne, with her mom here, was diagnosed with Crohn’s when she was 8 years old. With the help of a special diet, Adelynne has been in clinical remission for more than two years.

A first-of-its-kind-study led by Dr. David Suskind, a gastroenterologist at Seattle Children’s, published in the Journal of Clinical Gastroenterology, found a special diet called the specific carbohydrate diet (SCD) could bring pediatric patients with active Crohn’s and ulcerative colitis into clinical remission.

The findings support the use of SCD – a nutritionally balanced diet that removes grains, dairy, processed foods and sugars, except for honey – as a sole intervention to treat children with inflammatory bowel disease. Read full post »

Kids With IBD Cook up a Recipe for Remission Using a Unique Diet

Avi Shapiro, 17, suffered from Crohn’s disease. He achieved remission through a unique diet called the specific carbohydrate diet (SCD). Now, he has made it his mission to share the benefits of the diet with other kids like him.

Avi Shapiro knows his way around the kitchen. While the average teen might be fishing around their pantry for a bag of potato chips or a box of cookies, Avi is in the kitchen whipping up ingredients for his next delicious concoction. Depending on the day, he might prepare homemade marshmallows, a serving of spaghetti squash pesto or a scrumptious stack of waffles baked to perfection.

The effort that Avi puts into cooking these delectable dishes isn’t purely for pleasure or practice to become the next winner of “Top Chef.” For the 17-year-old, cooking food has become a lifestyle that he has learned to embrace over the last three plus years to remain healthy after achieving remission from Crohn’s disease, a form of inflammatory bowel disease (IBD).

“I learned that being able to cook is a valuable skill to have,” said Avi. “Knowing the types of ingredients to buy which support my well-being and getting to create and eat meals that I actually enjoy feels truly amazing.”

Read full post »

Ben’s Customized Prosthesis is Out of This World

Ben, 19 months old, shows off his Stormtrooper prosthesis.

With every step 19-month-old Benajmin (Ben) Bronske takes, a legion of Stormtroopers lead his way.

Born into a family of avid Star Wars fans, Ben has become a fan as well. With an infectious smile, while wearing a shirt that says, “I’m a Trooper,” Ben proudly shows off his leg. It was uniquely made just for him – it’s covered in Stormtroopers.

“He’s got a really cool leg and a story to go with it,” said Sarah Bronske, Ben’s mother. Read full post »

Seahawks Visit Seattle Children’s, Spread Cheer to 12s in the Hospital

Nico, 15, got a surprise visit from the Seahawks and Sea Gals.

Today, rounds of a different kind were made. Instead of doctors in white coats, the Seattle Seahawks and members of the Sea Gals, dressed in blue and green, made their way through the hospital to visit patients and families at Seattle Children’s. They couldn’t have picked a better day to bring cheer to 12s in the hospital: Dec. 12 (12/12).

“Today brought us a lot of joy, even if it was just for a minute,” said Alberto Tobias, father of Nico Tobias, a patient at Seattle Children’s. “It was really fun. We were so happy to see the players walk into our room.”

The Captain’s Blitz is an annual tradition that brightens the day for Seahawks fans big and small at Seattle Children’s. Read full post »

With a Genetic Answer, Parents Find Comfort in Son’s Rare Epilepsy

Genetic testing helped diagnose Nolan Wood, 3, with KCNQ3 epilepsy.

Even though Nolan Wood hadn’t experienced a seizure in more than two years, his parents still had questions about their son’s future.

“We wondered if there were others out there that have what Nolan has,” said Emily Wood, Nolan’s mom. “If so, what does their life look like?”

The Woods’ search for answers began when Nolan, 3, was diagnosed with infantile spasms and regression of his motor skills when he was 6 months old. Before receiving seizure medications, Nolan had hundreds of daily subtle, reflex-like seizures. Due to the regression of his motor skills, he had stopped rolling over, smiling and crying. A condition known as cortical visual impairment had also rendered him legally blind. Read full post »

Pinpointing Pancreatitis: How Family History Played a Role in Amber’s Painful Illness

It’s holiday time in the Louden household. However, this year is unlike any other. For the first time in 11 years, 17-year-old Amber Louden will be able to join her family at the Thanksgiving table and indulge in some of her favorite dishes pain-free.

“I remember Thanksgiving two years ago; I ate so much food that I ended up in the hospital because of the horrible pain I was in,” said Amber. “Last year, I didn’t even get a chance to sit at the dinner table because I spent the holiday in the hospital where I stayed for 12 days.”

Amber’s decade-long battle with chronic pancreatitis prevented her from partaking in cherished holiday traditions.

It may be surprising that these traditions and the root of Amber’s struggle with pancreatitis share one common factor — and that happens to be family.

Read full post »

Surgery Frees Lillee from Seizures Medication Couldn’t Stop

Lillee Haynes, 4, surrounded by her three older brothers.

When 4-year-old Lillee Haynes runs through the doors of Seattle Children’s South Clinic for her speech therapy appointment and heads straight for a table covered in crayons, it’s hard to imagine that nearly two years ago she faced hundreds of epileptic seizures each day.

“Her seizures happened so often that I installed a camera above her bed to record any she had at night,” said Aimee Haynes, Lillee’s mom. “One night the camera recorded 200 movements. I was shocked to see how many seizures disrupted her sleep.”

Lillee’s brain didn’t rest until she underwent not one, but two neurosurgeries at Seattle Children’s to remove the diseased area of her left brain, allowing her healthy brain to grow and develop.

“You could say Lillee is most definitely right-brain dominant,” laughed Haynes. “That might explain why she has such a spicy personality.” Read full post »

Newborn Screening for Rare Disorders Becomes Researcher’s Lifelong Mission

Kaitlyn and Ryan Wyckoff travel from their hometown of Wasilla, Alaska, to Seattle Children’s so Dr. Sihoun Hahn (center) can monitor and treat them for Wilson disease — a rare genetic disorder.

For the first 15 years of his life, Ryan Wyckoff appeared to be a perfectly healthy, active teenager, living with his family in Wasilla, Alaska.

But during New Year’s weekend in 2009, Ryan began to feel seriously ill. He was lethargic and had a high fever that could not be controlled by acetaminophen.

Ryan was so sick he could barely make the trip to his family doctor. The doctor thought Ryan looked jaundiced and referred him to their local hospital, but providers there found nothing wrong so they sent him home.

Ryan’s symptoms worsened. He gained 15 pounds in just a couple days as fluid built up in his abdomen. Ryan’s mom, Lisa Wyckoff, remembered how her tall, slender son looked like he was pregnant.

An MRI revealed Ryan had cirrhosis — advanced scarring in his liver. His condition was life-threatening, so he was flown to Seattle Children’s by Medivac.

“It’s terrifying to have something seriously wrong with your son that no one can figure out,” said Lisa. “We felt so helpless.” Read full post »